It's hard to liken this journey to much of anything, but as someone said earlier this week and as Mimi continues to talk about - this is a roller coaster!
I'm feeling pretty good today. The "if Momma ain't happy, ain't nobody happy" saying used to hold true for our household. Now, it has everything to do with how Clara is doing. Are her meds keeping her comfortable? Does she have a procedure? Is she retaining fluid? Is her nurse keeping her awake?!?!
Yesterday was a GREAT day. We finally figured out the best combination of meds and, after sleeping from 3am to 2 pm, she awoke happy, smiling, and eager to interact!
I immediately called the Occupational and Physical Therapy gals who hadn't yet been able to "play" with Clara to see where she is developmentally. One of my concerns is about her ability to coordinate her latch and suck. She seems to be making progress, but they are helping make sure that continues. My other concern has to do with her being previously "advanced" in several development categories, and I want to help support her continued growth despite being in a hospital bed for so long.
It was INCREDIBLE to watch them with her. I love how they can calmly coax her into grabbing a toy, rolling over, enjoy sitting up and moving about. She has regressed in some ways and actually progressed in her tummy time strength - which shocked me!
Today, she had two great awake periods and other than some serious discomfort when she yawns which makes her gag and cough, she was a really happy baby.
She came off of her lipids and TPN (which are how she has been getting her nutrition since she hadn't been able to eat). This should show a marked improvement in the number and duration of her feedings. We are expecting a good night tonight as she seems to be quickly readjusting to nights being nights and days being days. But, we will see. I wouldn't be surprised if she wakes up in an hour or so and wants to be awake for a while. Two nights ago it was until 3am and last night it was until 1. Based on her behavior when she went to bed at 9 tonight, I am hoping she stays asleep...until she wants to eat for the first REAL feeding in 2 weeks. I honestly can't wait for that! I hate this pumping thing and totally love having her back at my breast. I completely didn't understand how wonderful it was until I lost it.
So, there is my big post. I am bad about starting a post and then never finishing it. So I will try hard to update with smaller, easy to post and read posts each day. Thank goodness Alan is giving you some updates as well so that we can both remember what has happened over time and keep you all in the loop.